Son in Law

[Guest guest]

Hi....my son in law was diagnosed with sarcoidosis back in June

after being rushed to the ER with chest pains and inability to

breathe. After a week in the hospital and various tests and a

biopsy of the lymph nodes in his chest they determined the

diagnosis. He had a hard time getting rid of the pnuemonia and was

eventually put on the steroids. He was also having " other " problems

and was told to see a urologist. After consulting with her she

found out that he had almost no testosterone level (less than 20) in

his system and his LH and one other hormone level were extremely low

also. So she sent him to an endocrinologist and put him on a

testosterone patch and some other meds. Obviously, secondary to his

health, they are upset because they wanted to have a child and with

these problems, that would be extremely difficult. He just had more

blood work and an MRI of the head to see what was up with the

pituitary gland. They said he probably has neurosarcoidosis. Does

anyone else here have that? He sees the Doc again the day after

xmas, but in the MRI pics it appears that the sinuses are not

symetrical. It looks like one is full with some type of tissue and

we were wondering if that could be the granulatomas tissue from

sarcoids (as it appears white like the other tissue does on the

MRI). He has also been getting bloody noses more frequently. We're

all just very scared for him and some of the reading about

neurosarcoidosis does not calm us any. Thanks so much......it's

nice to have somewhere to go for info and support!

[Guest guest]

Your son in law is lucky to have such a caring family around him. Thank you for being willing to do the research necessary to help. We all appreciate it--and know how important it is to have a supporting family and friends.

Many of us here have Neurosarcoidosis. I've started with pulmonary sarcoidosis 15 years ago, along with iritis (inflammation of the iris of both eyes). I was treated with high dose prednisone for several years, and then went into "remission" for about 5 yrs.

For the last 6 yrs, I've been living with NS, pulmonary, systemic sarcoidosis.

I explain that it's "like" having MS, Dementia, Peripheral neuropathy and Rheumatoid arthritis all wrapped in one.

For me, the MD's insisted on putting me back onto prednisone initally and it took another 15 months to wean off. By the time I got off it, I had developed diabetes. Not to mention the psychosis that goes with high dose steroids.

One thing that multi-system sarc does is zap you of your energy. You have none. So listening to your body and resting when it says rest is so very important.

what is happening is that your immune system is in hyperdrive, so your body thinks it has something to heal. Unfortunately, whatever infection or injury that turned the immune system on doesn't get the right signals to turn it off. The inflammation in your body--joints, muscles, ligaments, blood vessels (vasculitis) bones-- and brain keeps you running a low grade fever constantly.

Treatment can be with several immunosuppresants. It generally takes a combination to get this under control.

Plaquenil helps with pulmonary and body pain. Methotrexate helps with the systemic sarcoid induced arthritis. Imuran, Arava, and other DMARDS (Disease Modifying AntiRheumatic Drugs) are helpful. It is trial and error-- but worth the trial.

The new BRM's-- Biological Response Modifiers--Enbrel, Humira and Remicade are helping in getting the TNF-a and b proteins under control. TNF is Tumor Necrosing Factor--and we produce too much and can't clear it out of our system. This is a protein that cleans up the white cells after an infection - and in us, just stacks up and ultimately grows the granulomas.

In our LINKS and ARCHIVES--the site address is at the bottom of this and every email we send out- -you'll find a tremendous amount of articles that you can print out and take to your MD's.

Sites that I highly recommend is FSR--Foundation for Sarcoidosis Research and www.arthritis.org. This is where you can find the info on the medications--BRMS, DMARDS, etc. (I believe it's a 2005 Drug issue.)

Hydration, and sugar control is so very important in helping yourself get better. The least amount of dehydration raises hell with the body pain--as our muscles and ligaments need fluids to flush the toxins out-- and since we do run that constant fever, we're constantly fighting dehydration.

High blood sugar caused by the years of steroids adds insult to injury when it comes to the neuropathy. I've found that the SUGAR SOLUTION book by Prevention Magazine is the best instruction manual for keeping my blood sugar in normal range.

This group is over 400 people, and many of us have had NS for years. It is possible to live with the disease-- and I know it's scary, because it is serious. The medical MD's don't know what causes it, or how to treat it-- so we are our own researchers--and it is imperative that we learn to be assertive in our care. If your MD won't work with you-or listen to you-- find other MD's. It has to be a "team" approach.

Again, thank you--it warms my heart to know that some of the families do get involved, rather than deny what is going on-- your son-in-law is blessed.

We're here for all of you, and if it does take a day or two--know that your questions and emails will be answered. Since most of us are dealing with this disease first hand, we have to follow the rule of "listen to your body" and pace ourself also.

Merry Christmas, and Blessings for a Healthful New Year,

Tracie

NS Co-owner/moderator